Interesting. Please understand this forum was not around when I was in active treatment. Sure wish it had been, it a wealth of information. To the best of my knowledge, I did not hear about Dr. Kemeny and the HAI pump until here. There is a chance I may have run across it back in 2004 and 2005, butt did not understand the whole picture. Thank you.

hopie wrote:I'm not the one who has cancer, but it doesn't change the fact that this is the worst and harder thing I've ever had to face. And this is not necessarily "making it about me," it is just a fact.

I also didn't see the original post, but I'm a caregiver to my husband and this statement really struck a chord. I was living that nightmare and couldn't understand how my pain could be as bad as his. I even made posts here agonizing over how much I was suffering mentally and felt like what I was feeling wasn't valid because I'm "just the caregiver". Even now that he's out of treatment I gloss over with friends and family, minimize my part in all of it because he was the one with cancer. So when my Grandma acknowledged how hard it must have been for me I nearly broke down crying.

As a caregiver I'm very involved, but that's our dynamic. John just took everything in stride, never asked a question and went through the motions. I went to every appointment because I was the one learning the terms, asking the questions, and managing his care at home. Maybe it would have been different if our Oncologist was easier to reach, but if John comes home with at best a summary of what was discussed with no real details and I have a question it most likely won't get fully answered until the next appointment. So for my own sanity I went (and still go) to every appointment and he welcomes me. I don't dictate for him or try to get between him and his doctors, I stand beside him to help hold him up.

hopie wrote:I'm not the one who has cancer, but it doesn't change the fact that this is the worst and harder thing I've ever had to face. And this is not necessarily "making it about me," it is just a fact.

I also didn't see the original post, but I'm a caregiver to my husband and this statement really struck a chord. I was living that nightmare and couldn't understand how my pain could be as bad as his. I even made posts here agonizing over how much I was suffering mentally and felt like what I was feeling wasn't valid because I'm "just the caregiver". Even now that he's out of treatment I gloss over with friends and family, minimize my part in all of it because he was the one with cancer. So when my Grandma acknowledged how hard it must have been for me I nearly broke down crying.

As a caregiver I'm very involved, but that's our dynamic. John just took everything in stride, never asked a question and went through the motions. I went to every appointment because I was the one learning the terms, asking the questions, and managing his care at home. Maybe it would have been different if our Oncologist was easier to reach, but if John comes home with at best a summary of what was discussed with no real details and I have a question it most likely won't get fully answered until the next appointment. So for my own sanity I went (and still go) to every appointment and he welcomes me. I don't dictate for him or try to get between him and his doctors, I stand beside him to help hold him up.

Thank you crikklekay, I wish I could write like you!!It is hard and sort of.. feels like we have no right to.. feel struck by this disease because it is not ‘happening to us’.You are descibing my feelings. But for the fact that I was injured in a trafic accident (not my fault) and unable to accompany my DH for his 8 chemo after liver resection. (He had to care for me!! ) To me that is an added sorrow.Again Thank You for your words.

I have been in the position of primary supporter to my brother who was diagnosed with a grade IV glioblastoma. I internalized my brother’s dire circumstance. His pain became my pain.

I am currently in the position of patient, with life-limiting endocrine failure. It may seem cliche’ to say, but I make it a point each day to show my love to my family and to make positive memories.

A serious illness impacts everyone in a family. Karen

Dear friend to Bella Piazza, former Colon Club member (NWGirl).I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of BellaI am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.